A qualitative study exploring caregivers’ experiences, perspectives, and expectations for precision medicine in epilepsy in South Africa

Muchada, Irene Farisai; Wilmshurst, Jo M.; Laing, Nakita; Davies, Elin Haf; Fieggen, Karen

doi:10.1016/j.yebeh.2021.107873

Cited by 9 publications

(13 citation statements)

References 31 publications

(28 reference statements)

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“… 31 , 32 That engagement in, and enthusiasm for, digital solutions is greater in young individuals is not surprising but qualitative data from our study show that older people understand the value of mHealth and can be supported to engage. 21 This is in alignment with recent findings from South Africa which showed a positive correlation between individuals aged between 46 and 60 years who resided within 1 kilometer of their clinic, and an eagerness to engage with a mobile application for the purpose of ordering medication. 33 Health applications, combined with the present technological momentum, are seeing more people across sub‐Saharan Africa access mobile technology and provide a great opportunity to potentially improve the treatment outcomes of billions of patients.…”

Section: Discussionsupporting

confidence: 88%

“…Many participants were not familiar with smartphone technology and were unsure of what was required and felt overwhelmed by the instructions given. 21 Bluetooth connection and upload of data from the wearable were particularly challenging. Limited access to networks, particularly when visiting rural areas as well as inconsistent supply of mobile data, may have also hampered data collection.…”

Section: Discussionmentioning

confidence: 99%

“…A qualitative study with a subset of participants to gain a richer insight into these experiences was undertaken and is reported elsewhere. 21 …”

Section: Methodsmentioning

confidence: 99%

“…A qualitative study with a subset of participants to gain a richer insight into these experiences was undertaken and is reported elsewhere. 21 Descriptive statistics were used to summarize the wearable and mPROs data. Descriptive results are presented as mean and standard deviation for normally distributed data and median and range for not normally distributed data or percentages, as appropriate.…”

Section: Quantitative Data Analysismentioning

confidence: 99%

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Demonstrating the feasibility of digital health to support pediatric patients in South Africa

Davies¹,

Fieggen

Wilmshurst

et al. 2021

Epilepsia Open

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Resources for management of epilepsy in Africa are extremely limited reinforcing the need to develop innovative strategies for optimizing care. Studies have shown that the prevalence of epilepsy in low-and middle-income countries is substantially greater than in more resourced countries. The objective of this report was to demonstrate that mobile Health (mHealth) technologies have the potential to improve the management of epilepsy in Africa. Methods: The feasibility of technology-based home monitoring was investigated in an observational study of 40 children with refractory epilepsy or epilepsy associated with intellectual disability and/or behavior difficulties in South Africa. Technologybased home monitoring was implemented for six months. Physical activity, sleep, and heart rate were continuously monitored with a wearable device. Caregivers completed regular mobile Patient Reported Outcomes (mPROs) and reported seizuresand ad hoc events using a dedicated app. Feasibility was assessed and descriptively measured for recruitment, retention, and engagement of the participants. Results: The mHealth technology was able to capture important information that gives an impression of the overall experience of the children and their caregivers.Thirty-seven participants (94.9%) reported at least one clinical event. Seventy-nine percent of caregivers reported seizure events in their children, which were the primary event anticipated. Median engagement with the wearable device and monthly mPROs was 30.8% and 57.1%, respectively. However, most participants (87%) had to be given smartphones for them to have Bluetooth capabilities and access to the study app. Tolerability to the device was impacted by the difficult living circumstances of caregivers that induced fear of loss or theft. Significance: The study showed how the use of remote patient monitoring in the form of mHealth can benefit epilepsy patients, despite highly variable engagement with the technology. The combination of mPROs and wearable devices generated informative datasets that will allow clinicians but also the children and their caregivers to better understand and manage the disease. K E Y W O R D S feasibility, mobile health, refractory epilepsy, wearable technology Key Points• mHealth technology appears feasible in an epileptic-specific context within a resourcelimited setting but its utility is limited by local barriers.• High data can be captured in this setting despite local challenges.• The mHealth technology enabled clinicians to observe their patients outside of the clinic which may enable further tailored treatment.• Innovations accounting for socioeconomic factors are needed to optimize impact of mHealth technology.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

“…A qualitative study with a subset of participants to gain a richer insight into these experiences was undertaken and is reported elsewhere. 21 …”

Section: Methodsmentioning

confidence: 99%

Section: Quantitative Data Analysismentioning

confidence: 99%

See 2 more Smart Citations

Demonstrating the feasibility of digital health to support pediatric patients in South Africa

Davies¹,

Fieggen

Wilmshurst

et al. 2021

Epilepsia Open

Self Cite

View full text Add to dashboard Cite

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“…Researchers have taken different approaches, such as focusing on patients with different cultural and family backgrounds, [5][6][7] different ages, [8][9][10][11][12][13] region-specific, [14][15][16][17][18][19][20][21][22] and inter-environmental. [23][24][25] Some studies have focused on the treatment gap, [26][27][28][29][30] special etiology, [31][32][33][34][35][36] and disease burden [37][38][39][40] in the tropics, aiming to formulate appropriate policies [41][42][43][44] for PWE.…”

Section: Introductionmentioning

confidence: 99%

Status of epilepsy in the tropics: An overlooked perspective

et al. 2023

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Epilepsy is one of the most common serious chronic neurological diseases affecting people of all ages globally. It is characterized by recurrent seizures. About 50 million people worldwide have epilepsy. Indubitably, people with epilepsy (PWE) may be without access to appropriate treatment. Many studies have examined the molecular mechanisms and clinical aspects of epilepsy; nonetheless, the treatment gap exists in some special areas. In the tropics, the specific geographical and ecological conditions and a lack of medical resources result in neglect or delay of diagnosis for PWE. Herein, we summarized the epidemiology of epilepsy in the tropics and discussed the disease burden and existing problems, aiming to offer a medical environment for patients in need and highlight the importance of reducing the epileptic disease burden in tropical countries.

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Precision medicine approaches in epilepsy: A systematic review of genetic markers and personalized treatment strategies

Agarwal,

Kaur,

Ashfaque

et al. 2024

Precision Medical Sciences

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Epilepsy is one of the most common neurological diseases globally. We conducted a systematic review of the genetic markers and personalized treatment strategies used in the precision medicine treatment of epilepsy. An exhaustive electronic search was carried out on PubMed and Google Scholar, spanning from inception up to June 2023 on epilepsy and biomarkers. A total of 45 articles from PubMed and 19 articles from Google Scholar were imported and screened based on studies that focused primarily on genetic markers and precision methods for epilepsy subtyping, treatment strategies, outcomes, and adverse effects. Reviews and studies not in English were excluded. Full‐text data extraction, coding, and analysis were carried out with Microsoft Excel. For the risk of bias assessment of the final included studies, the Critical Appraisal Skills Program checklist was used. A total of 19 studies were analyzed in the review. The SLC35A2 gene saw a reduction in seizure frequency with d‐galactose treatment while the KCNQ2 gene saw improvement with phenytoin, carbamazepine, and retigabine. GRIN2D gene saw varying improvements with memantine. KCNT1 gene saw improvement with only a combination of quinidine and topiramate, quinidine was not useful when used alone. Other studies involved the identification of different markers using gene and exome sequencing. These studies collectively provide a diverse range of insights into epilepsy, with variations in study design, sample size, age groups, and diagnostic criteria, highlighting the multifaceted nature of epilepsy research. These studies contribute to our understanding of epilepsy diagnosis and management in different clinical settings, however, there were some limitations such as QT prolongation was observed with specific medications and participant heterogeneity. Small sample sizes reduced statistical power and brief durations of studies limited their ability for long‐term analysis. Although most studies had a low risk of bias, two studies demonstrated some reporting bias. Fianlly, the absence of biomarkers is a limitation that impedes the study's capacity to explore underlying biological mechanisms.

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A qualitative study exploring caregivers’ experiences, perspectives, and expectations for precision medicine in epilepsy in South Africa

Cited by 9 publications

References 31 publications

Demonstrating the feasibility of digital health to support pediatric patients in South Africa

Demonstrating the feasibility of digital health to support pediatric patients in South Africa

Status of epilepsy in the tropics: An overlooked perspective

Precision medicine approaches in epilepsy: A systematic review of genetic markers and personalized treatment strategies

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